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影响小脑性共济失调患者生活质量的吞咽困难——一项大型调查。

Dysphagia Affecting Quality of Life in Cerebellar Ataxia-a Large Survey.

机构信息

Department of Neurology, Charité-Universitätsmedizin Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Charitéplatz 1, 10117, Berlin, Germany.

NeuroCure Clinical Research Center, Charité-Universitätsmedizin Berlin, Charitéplatz 1, 10117, Berlin, Germany.

出版信息

Cerebellum. 2020 Jun;19(3):437-445. doi: 10.1007/s12311-020-01122-w.

Abstract

Dysphagia is a common symptom in neurodegenerative disorders and is generally associated with increased mortality. In the clinical care setting of ataxia patients, no systematical and standardized assessment of dysphagia is employed. Its impact on patients' health-related quality of life is not well understood. To assess the impact of dysphagia in ataxia patients on diet, body weight, and health-related quality of life. We conducted a large survey using self-reported questionnaires for swallowing-related quality of life (Swal-QOL) and a food frequency list in combination with retrospective clinical data of 119 patients with cerebellar ataxia treated in the neurological outpatient clinic of a large German university hospital. Seventeen percent of ataxia patients suffered from dysphagia based on the Swal-QOL score. Less than 1% of all patients reported dysphagia as one of their most disabling symptoms. Dysphagia was associated with unintentional weight loss (p = 0.02) and reduced health-related quality of life (p = 0.01) but did not affect individual nutritional habits (p > 0.05; Chi-squared test). Dysphagia is a relevant symptom in cerebellar ataxia. A systematic screening for dysphagia in patients with cerebellar ataxia would be desirable to enable early diagnosis and treatment.

摘要

吞咽困难是神经退行性疾病的常见症状,通常与死亡率增加有关。在共济失调患者的临床护理环境中,没有系统和标准化的吞咽困难评估。它对患者健康相关生活质量的影响尚不清楚。为了评估吞咽困难对共济失调患者饮食、体重和健康相关生活质量的影响。我们使用自我报告的吞咽相关生活质量(Swal-QOL)问卷和食物频率表对 119 名在德国一所大型大学医院神经病学门诊接受治疗的小脑共济失调患者进行了大型调查,并结合回顾性临床数据。根据 Swal-QOL 评分,17%的共济失调患者存在吞咽困难。不到 1%的患者将吞咽困难报告为最致残的症状之一。吞咽困难与非故意体重减轻(p=0.02)和健康相关生活质量下降(p=0.01)相关,但不影响个体的营养习惯(p>0.05;卡方检验)。吞咽困难是小脑共济失调的一个相关症状。对小脑共济失调患者进行吞咽困难的系统筛查是可取的,以便能够早期诊断和治疗。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/416e/7198478/165b4cd6a8d4/12311_2020_1122_Fig1_HTML.jpg

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